Sight

Chopin to the Rescue

Evelyn Herwitz · May 2, 2023 · 2 Comments

Last Thursday, I drove two hours in heavy traffic to Beth Israel Deaconess Medical Center in Boston to participate in a three-hour clinical study. As I wrote back in November, not long after I had a heart catheterization stress test, one of the cardiologists asked if I’d be willing to participate in a study to find a non-invasive alternative. I agreed, because the test was very unpleasant. If I could help to spare someone else that ordeal, I was willing.

So, after ignoring my GPS, which led me to the wrong side of the hospital, I finally found the parking garage and headed inside. (If you’ve ever been to the Longwood Avenue complex of medical centers in Boston, you’ll appreciate that this was no easy feat.) A pleasant research associate greeted me and reviewed the study protocol, which I had read in advance, so I knew, approximately, what I was in for: a six-minute walking test to establish my baseline, followed by an ECG, an IV insertion, a blood draw, then being hooked up again to an ECG for a 20 minute MRI, followed by up to 10 minutes peddling a recumbent bicycle, followed by a contrast dye infusion and another 30 minutes in the MRI. Not a cakewalk, but still better than the invasive procedure.

Now, I’m no fan of MRIs, which are loud and claustrophobic, and I was trying not to get anxious, anticipating THE BIKE. Last time I did this, I lasted three minutes before I felt really awful, because my pulmonary pressures skyrocketed. I was hoping that my new medication, more exercise in recent months, and better diaphragmatic breathing would all help.

So I really appreciated it when one of the researchers kindly asked if I’d like some music while in the MRI. I requested classical. “What kind of classical?” she asked. Really? You get a choice? I went for Chopin piano etudes, a favorite, and some of the most soothing music I could think of on the spot.

The walking test was easy. They set up two cones in a hallway of the research patients’ floor, and I kept a steady pace, back and forth, for the full six minutes with no issues. Ever the A student, I was pleased to know I was among the fastest walkers in the study, so far.

Then came the MRI. Lots of equipment to attach and adjustments to make as I lay on the bed that slides into the maw of that noisy monster. And, of course, it took two sticks to get a working IV in my arm, which is always the case. The final step was a set of earplugs to lessen the bangs and beeps, plus the headphones, and adjusting the volume so I could still hear Chopin. I hung onto every note of the beautiful melody as they slid me into the MRI and the study began.

The piano etudes were interrupted every few minutes by a recorded voice that instructed me when to breathe in, breathe out, then hold until I could breathe normally again. Beeeeep-bang-bang-bang-rumble-bang-bang-beep-beeeeep-bang. Ahh, Chopin.

I was glad when they rolled me out of the MRI, until the research tech told me that we weren’t done, yet, because the research software had crashed. Help was on the way. Fortunately, rebooting the computer solved the problem—and we were able to pick up where we left off. “Three million for the research software, but we’re still on a Microsoft platform,” he quipped.

Finally the first phase of MRI scans was completed and they rolled me out again, this time for THE BIKE. No headphones for this phase. I was on my own. I peddled up to the tempo they needed to boost my heart rate and made it through the first two minutes of resistance without a problem. “You’re like a metronome!” said the research tech. “Most people slow down and speed up.” “We aim to please,” I said, focusing on my breathing.

“On a scale of 1 to 10, how difficult is this?” asked another member of the team. I had trouble answering the question as she raised the resistance to the next level. “A 4?” I answered. Honestly, it was hard to assess while I was trying to manage my breathing. After about a minute at that resistance level, I began to feel some mild chest pressure, which I reported. I was able to finish another minute of peddling, and then they ended that part of the process. A good thing, because I could sense that I was going to start tanking soon.

Headphones back on, first dose of contrast dye infused, Chopin playing in my ears, I began to relax again—until the banging started up. At one point, there was some brrp-brrp-brrping that almost drowned out the music for what seemed like an eternity. I began to feel a bit claustrophobic, but at least could feel my legs outside the machine and even, sort-of, see them. The piano notes that I could catch were my buoy.

Finally, after a second infusion of dye and more banging and clanging, I was done. I felt a little shaky when I sat up, with help, but was soon able to walk back to the changing room and get dressed. They got the data they needed, and I survived without that awful shortness-of-breath feeling. I did my bit for medical science, and, I hope, for someone else down the line who can avoid having a mask with a breathing tub clamped to their face and a heart catheter threaded down their neck while peddling THE BIKE.

On my way out of the hospital, I rewarded myself with a glazed doughnut for the drive home. And just as I got back on the Mass Pike, what should be playing on my Sirius XM station? Chopin, of course.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Accuray

A Big Apple Birthday

Evelyn Herwitz · April 25, 2023 · 4 Comments

Last Tuesday was my 69th birthday, so what better way to celebrate than to spend it in New York City, one of my favorite places in the world. I hadn’t been to New York since before the pandemic, which was rather stunning to realize as I planned our overnight jaunt. So, we made the most of it.

On Monday afternoon, we left our car in New Haven and took the train (seniors get a 50 percent discount—a definite advantage of aging) to Grand Central, then walked to our hotel, called (how could I resist?) The Evelyn, just north of Madison Square Park in so-called NoMad. Not only was the hotel’s name appealing, but also the decor—Art Deco and themed to nearby Tin Pan Alley, the birthplace of popular American music at the turn of the 20th century. The row of buildings on West 28th Street where songs like Give My Regards to Broadway by George M. Cohan and Take Me Out to the Ball Game by Albert Von Tilzer were composed and published have been preserved, although, true to New York’s evolving neighborhoods, they now house a group of wholesale hat and scarf importers.

On Monday night, we had dinner in the East Village at Caravan of Dreams, which serves creative and delicious vegan organic dishes, quite a treat. After a restful sleep, we spent much of Tuesday at the Museum of Modern Art. There is currently a fantastic, curated retrospective of the museum’s collection, including works by German expressionists and some Bauhaus pieces that I wanted to see. But there is always so much to savor at MoMA, and it was great to be back.

We had lunch at the museum’s Terrace Cafe, and when I ordered a slice of chocolate cake with raspberry sauce (one of my favorite flavor combinations) to split with Al, he informed our waiter that it was my birthday. Soon the waiter returned with the cake and a candle and a song, and when he finished, the whole place applauded. I felt very celebrated and grateful. And the delicious cake was on the house.

All in all, a wonderful way to mark #69. Here are some photos of favorites. Enjoy.

“Storm Clouds Above Manhattan” by Louis Lozowick (1935)

“Modjesko, Soprano Singer” by Kees van Dongen (1908)

Decorative dividers, including Frank Lloyd Wright stained glass and woven hanging by Annie Albers

“Wind Tunnel Construction, Fort Peck Dam, Montana” by Margaret Bourke-White (1936)

“Broadway Boogie Woogie” by Piet Mondrian (1942-43)

Design Flaw

Evelyn Herwitz · April 18, 2023 · 2 Comments

Last Friday it was really hot, in the 90s, the kind of sudden temperature spike that causes spring to fast-forward. The kind of day that makes dough rise quickly, as was the case in my kitchen, because Passover was over and I needed to bake some challah for Friday night. By late afternoon, the dough had plumped high in its bowl. Even with the back door and porch slider open, the kitchen was uncomfortably warm.

So, I opened our two solar-powered kitchen skylights to let the heat out through the roof. They operate by remote control, and if it rains, close automatically. Quite the technological innovation, compared to our old leaky skylights with their clunky crank that required a wobbly pole to open and close.

Cleaning up after dinner, I picked up the remotes (each window has its own) and clicked the button to close each skylight. The left one immediately began to shut. But not the right. I switched out the AAA batteries and tried again. No luck. I tried the remote for the left skylight. Nope. Temperatures were sinking overnight into the 50s, and the skylight was wide open. I said to Al, “We have a problem.”

Now, Al, by his own admission, is not Mr. Handyman, and although I can see what needs to be done, I cannot often do it if the task requires some manual dexterity. Also, when I get stressed, I have trouble with word-finding. This is a problem that developed after I hit menopause, and it is extremely frustrating, which only makes the problem more pronounced. I know what I want to say, but I have to talk around the subject to get to the words I want. “Thingy” is one of my fall-back nouns. Not great for giving directions to my dear husband.

I had no idea where I had put the instructions for the skylights, so I began searching online for our skylight brand and problems with the remote. I soon learned that the issue involved resetting the wireless signal between the skylight and the remote. That made sense. Just one problem. You had to remove the insect screen from the skylight in order to do the reset, because the sensor was in the skylight frame. “It’s easy,” reassured the YouTube video. “All you need is a paperclip.”

Really? Now, I don’t about you, but as far as I know, skylights are located in ceilings. And in our kitchen, the ceiling is high, maybe 12 feet. I imagine that other people install their skylights in even higher ceilings. So you need a tall ladder to reach it. Which we do not own. On the rare occasions when we have a chore that requires one, we borrow from a helpful neighbor up the street. However, at 10:30 at night on a Friday, I was not about to call him.

Al’s first thought was to go up on the kitchen roof and try to make the adjustment from outside, an idea I emphatically vetoed. Even though the one ladder we own would make that possible (the eaves are lower than the peak of the roof), it was dark and too risky. Plus, as we later discovered, it would not have worked.

But he did convince me to let him try to bring that old rickety ladder inside and see if he could reach the skylight screen. He managed to prop it up safely enough, with me holding it steady and spotting him, to climb up and, by standing partly on the ladder and partly on the kitchen table, remove the screen from the skylight.

With Step 1 accomplished, we moved on to Step 2. This involved finding the tiny hole in the skylight frame that accesses the reset device. My ability to explain this to Al while I was getting more and more agitated because I could not find a working flashlight and we had to resort to using Al’s iPhone for him to locate this little pinhole in the skylight frame while I was replaying the YouTube video on mine was, shall we say, impaired.

However, we did locate the hole. Here’s where the paperclip comes in. You have to unbend a paperclip, insert it in the hole for 10 seconds, and then the skylight will move. Yes, a paperclip. Why not a button? Why not a switch? I have no idea.

Al inserted the unbent paperclip. Nothing. Now I was really getting frantic. How were we going to close it before the temperature dropped? Al suggested trying a larger paperclip, since he didn’t think the first one went in all the way. So I dumped all my paperclips on the table and found a bigger one, which I unbent and gave him. And, voila! The skylight began to hum and close. Thank goodness.

There’s a third step involved, which we postponed: sticking yet another paperclip into a hole on the remote, after you do the 10 second routine on the skylight frame, to re-pair the remote with the window. That will wait for a sunny day when we can borrow our neighbor’s ladder and not worry about a temperature drop.

After we put everything back in place and tidied up the kitchen, I was relieved. This was not how I had intended to spend Friday night, but we had managed to solve the problem, together, without breaking anything or getting injured or having an argument.

I was also incredulous. What genius thought it made sense to design a skylight that cannot be closed manually if it fails electronically, without climbing on a tall ladder to do so? And why a paperclip? This presumes not only that you have a tall ladder, but also that you have a stash of paperclips, which, in a world evolving away from using paper for documents that need to be clipped together, is becoming an anachronism.

But I digress. The one bonus of this adventure, if you’ve read this far, is it gave me a ridiculous story to tell. And we all need a good dose of ridiculous these days.

Harbingers of Spring

Evelyn Herwitz · April 11, 2023 · 2 Comments

At last, the weather is warming here in Central Massachusetts, and we’re turning green again. I’m always struck by the subtleties of early spring, how the tiniest buds and flowers emerge before I notice. And then, all of sudden, so much color. It always gives me such a lift.

You don’t have to go far to find these verdant harbingers. Here are a few glimpses from around our home. Enjoy!

Auf Wiedersehen

Evelyn Herwitz · March 28, 2023 · 8 Comments

And so, I made the trip to Germany. On my own, abroad, for the first time in my life. It was an extraordinary, transformative experience, not only for all that I saw and learned, and all the people I met along the way, but also for rediscovering that fearless explorer within, who has been hiding for decades since I first heard the word scleroderma.

As I’ve written here in recent months, the past couple of years with this disease have been more complicated. Finding myself suddenly short of breath when physically or emotionally stressed led to a battery of diagnostic exams, and ultimately a diagnosis of Type 2 Pulmonary Hypertension. Thanks to my wonderful cardiologist, I found a calcium channel blocker that works for me and mitigates the worst of the symptoms. I’ve also learned some new breathing techniques that help to avoid the problem when I start feeling stressed.

With all that, as I began to feel better again and moved past the worst of the pandemic, I felt a great need to get out—get out of my head, get out of my routine, and get out of the country to travel once more. I needed to prove to myself that I could do this on my own. Working on a novel about Germany during the Weimar Era and rise of the Third Reich, I had to see what I’d only been able to read about, and I needed to focus. I have family roots in Germany, as well. My mother and her parents immigrated to the U.S. in 1936 to escape the Nazis. So the visit was multi-layered.

As is always the case with travel, not everything went as planned. On both ends of my trip, I had to make last minute changes in my transatlantic flight—pushing back my departure from Boston by two days to avoid a Nor’easter that was threatening to wreak havoc with snow and high winds, and leaving a day early at the end when my flight home from Munich was cancelled due to a planned airport strike. (Yes, they plan strikes there, so you can work around it.) There were also two instances when the S-Bahn (commuter rail) in Berlin was running late or disfunctional, and I had to figure out how to grab a taxi to get to a tour on time. But it all worked out. And, to my amazement, I just rolled with it and problem-solved along the way.

For the most part, however, the trip was a wonderful journey, beginning with my seat mate on the way over, who was from Munich and gave me excellent suggestions for my two-night layover there. From Munich I flew to Berlin, where I stayed five nights in the very funky Hotel-Pension Funk, the former home of a silent film star that is decorated in period Art Nouveau style. I immersed in history, art, design, and architecture, including a visit to the Museum der Dinge (Museum of Things), where I learned about design standards as the country shifted from handcrafts to industrial manufacturing, and an outstanding private tour of sites and stories about Weimer Berlin. I also had dinner one evening with good friends and spent a day touring with them, as well.

From Berlin I traveled by train to Dessau, just under two hours southwest of Berlin, to stay at the Bauhaus, now a UNESCO World Heritage site. The Bauhaus School was in existence from 1919-1933, first in Weimar, then in Dessau, and finally for a brief period in Berlin before it closed under Nazi pressure. Founded by architect Walter Gropius, the Bauhaus melded art and technology to rethink how people could live and work humanely and cooperatively in post WWI society. I stayed two nights in what had been student housing, and toured the building as well as the outstanding Bauhaus Museum in the city.

From Dessau, I took a high speed train back to Munich, where I stayed at a small, very comfortable modern hotel in the Altstadt (Old City). My time in Munich at the beginning and end of the trip focused on why and how the Nazis formed there and gained power under Hitler. In both Berlin and Munich, I also visited concentration camp memorials—Sachsenhausen outside of Berlin and Dachau outside of Munich. Both tours were powerful experiences, sobering, profoundly thought-provoking. There is much dark history in Germany, but also a deep public reckoning with the past.

In Berlin, on Shabbat, I went to a synagogue that was a short walk from my hotel. The Pestalozzi synagogue was burned on November 9, 1938, on what has been called Kristallnacht, the Night of the Broken Glass, but is now referred to in Germany as the Reichspogrom—a more accurate description of the two nights when Nazis directed the destruction of synagogues and Jewish-owned businesses in pogroms throughout the country. Pestalozzi was not totally destroyed (burning it risked a neighborhood that the Nazis wanted to save) and was restored and rededicated after the war in 1947. It is a beautiful building, and the service felt much like ours at home.

Later, I realized that I was the first member of my family to set foot in a Jewish house of worship in Berlin in a century. It was one of the most important moments of the trip. I am still processing all that I experienced, and will be for some time. I am glad to be home, but I was also sad to leave. Most of all, I’m grateful to my dear Al, our wonderful daughters, many friends, and my entire medical team, who fully supported me on this adventure, and for the fact that I was able to thrive on my own.

Here are just a few images from my travels.

Sight

Share this:

Share this:

Share this:

Share this:

Share this: